Celiac and Your Sex Drive

in Celiac, Features
Published: August 23, 2013

632-03500812Is your love life lacking and passion fading into the past? This could be a symptom of celiac disease.

Phil Zimbardo wants to talk about sex. More precisely, he wants to talk about the utter misery of losing interest in it. As a life-long lover of women, he was at a loss when it happened to him, a Dr. Phil, a psychologist more used to seminars on mental health than dealing with his own, a prolific author and speaker – a guest, even, on the TV talk show hosted by that other Dr. Phil.

In his early 70s, Zimbardo was hit by a perfect storm of symptoms that included extreme fatigue, a bloated belly, constipation and the constant, embarrassing need to pass gas. Zimbardo knew it wasn’t just age-related, and his doctors were mystified. Maybe it was irritable bowel syndrome, they suggested, or excessive gas syndrome, which seemed little more than a catch-all term for a condition they couldn’t fix, no matter how many colonic treatments and anti-flatulence medications he was prescribed.

As his body betrayed him, Zimbardo grew depressed to the point that he lost interest in all things sensual and sexual. This was astounding since he’d always adored women: gorgeous, plain, curvy and not. Sex with his wife of nearly 40 years had become something he did out of duty; he “serviced her,” pretending to enjoy it because he was not able to be a full and willing participant. At the same time, he was aware that he was a faker, a guy who was crumbling on the inside as everything he had taken for granted about himself – his wit, his sexuality and his very masculinity – was erased. It was sheer torment.

Then a friend suggested that Zimbardo might have what she’d just been diagnosed with: celiac disease, an autoimmune condition that affects an estimated one in 100 people in North America. He had a vague idea of what it was – the body’s virulent reaction to gluten, a protein in wheat, rye, barley and many oat products, which damages the villi, the small, finger-like projections in the wall of the small intestine that help nutrients pass into the body. In turn, this compromises or prevents the absorption of important nutrients such as vitamins, phosphates and minerals.

“What do I have to lose?” he asked himself. Zimbardo made an appointment with a gastroenterologist, got his blood tested for the antibodies associated with celiac disease and then later had an intestinal biopsy to confirm the diagnosis. All of a sudden, he had a reason for his constipation, tiredness, gas, depression and the resulting sexual dysfunction, and a way to turn things around: eliminate gluten from his diet.

“No one talks about the sex part in celiac disease,” says Zimbardo, a prominent psychologist and professor emeritus at Stanford University in California. “No one tells you that your sex drive can shut down and your very manhood can be challenged. As a psychologist, I’m always analyzing behavior and I just couldn’t understand what has happening to me until I was diagnosed.”

He has a point. People often find it hard to talk about sex, period, never mind how it relates to celiac disease. Think of it: symptoms that have been linked to the disease run the gamut from diarrhea and stomach cramping to osteoporosis, weight loss and weakened tooth enamel. But it’s as if any discussion of the S-word has been shoved behind closed doors, to be whispered about, if at all.

With the digestive distress before a gluten-free diet is adopted, “you’re probably not going to feel really sexy, and you wonder if you’ll ever get your sexy back,” says Alice Bast, founder and president of the non-profit organization Beyond Celiac.

“Even after people are diagnosed, they don’t ask their doctors about something as simple as kissing,” she says. “But it’s a real concern. What do you do if the person you are about to kiss has just eaten gluten?”

A couple of years ago, Bast asked that question of a panel of specialists at the International Celiac Symposium in Oslo, Norway. “They were, like, ‘what?’”she recalls. “I said: ‘kissing’. They didn’t know what to say because they’d never dealt with this before. But people do ask me. They ask me all sorts of things they won’t ask their doctors.”

A 5 foot, 9-inch dynamo who weighed a mere 100 pounds when she was diagnosed with celiac disease, Bast started Beyond Celiac (originally called NFCA) to educate people and provide a forum for people with celiac disease. She says people ask her many questions when it comes to celiac disease and their sex lives. Like whether semen can contain gluten, and if the sex drive is affected by vitamin, hormone imbalances and plain old gas. (The answers: probably not and absolutely.)

Mindful of the panel’s confused response to what she considered a simple question, Bast and her Beyond Celiac colleagues put together a short video called “Sex and the Celiac.” It’s about how sneaky, undiagnosed celiac disease could be “fixing your funk” or “making your mojo a no-go.” The video, which has been a hit, has commonsense advice for people who suspect they have the disease: make an appointment with a physician pronto. “When in doubt check it out,” Bast says in the video. “If your libido is lacking, take the celiac symptom checklist and get your sexual side back in the game.”

Amid all the research into celiac disease, from its provenance to possible treatments, at the time of writing this article, Allergic Living was able to find only one small study that has focused on the level of sexual satisfaction among people with the condition. Published in 1998, it was done in Italy, the land of love and pasta, and it revolved around 55 patients with celiac disease: 24 men and 31 women between the ages of 18 and 65.

“Sometimes, I heard women complaining about troubles in their sex lives and sometimes, they would speak of how sex had gotten better after changing to a gluten-free diet,” says lead author Carolina Ciacci, a gastroenterologist and professor of medicine at the University of Naples Federico II. “It was clear that a study was merited.”

Next: How to get your groove back